The keeping of stories

When I was a doctor I was a keeper of stories- and I don’t mean just the person who entered those stories into casenotes. As Danielle Ofri says in her memoir of life at Bellevue Hospital in New York, Singular IntimaciesI often felt the weight of balancing so many patients’ stories within me. I remembered what people told me, the expressions on their faces, their pain and anguish, the events of their lives, and the impact that what had happened to them not only had on the person telling their story to me- but how it affected me- the listener.

From the general practitioners, psychologists and psychiatrists who have seen me through episodes of depression to the nephrologist I visit every year for my kidney disease there are a small number of people who know my story of ill health. I used to be able to count the ones who have been important on one hand but as I grow older it now takes two. There aren’t very many because most saw me for many years, through periods when I was very unwell, and much less frequently, in times of good health too. We knew each other. It was such a relief that I didn’t have to repeat my story each time we met. When my mood deteriorated, they remembered how I could be, what I had achieved in my life, and helped me to distinguish the person that I might really become from the one beaten down by the overwhelming impact of depression and anxiety. Over time, I was able to develop sufficient trust in each one to allow them to help me. I believed that they cared what happened to me, and the hope that they held for me each time I became unwell acted as a lantern to light the way on the road to recovery. They have been the keepers of my story.

Seeing the same health professional over time, something we call relational continuity of care, really matters. It is particularly important in primary care, where person-focused rather than disease focused care is far preferable for people with multimorbidity- older people like me with sometimes several different conditions. A recent systematic review led by Professor Sir Denis Pereira Gray, a veteran advocate of continuity of care who consulted in the same house as both his father and grandfather, has shown that it saves lives. Being able to see the same doctor really is a matter of life and death. Yet our policymakers have prioritised fast access over continuity so that it can now be increasingly difficult to see the same GP.

Continuity is also crucial in mental health care. When, at the recent Royal College of Psychiatrists International Congress, a mother told an audience the story of how her teenaged son had seen nine difference consultant psychiatrists in one year, many of us were shocked. How could such fragmentation of care have been allowed to come about in our mental health care system? How could the impact be anything less than highly detrimental? Yet it is clear from the reaction of so many people with whom I’ve discussed this in the last month that this story is so far from unusual. Nevertheless there is evidence that continuity of care is associated with better quality of life for people with severe mental illness. Another more recent study that compared mental health care systems based on continuity or specialisation pointed towards reduced length and number of hospitalisations, and faster or more flexible transitions between services in continuity systems. And both patients and staff (unsurprisingly) preferred continuity models.

This is not however to say that the old ‘sectorised’ model of the past, with one consultant overseeing a community, was without problems. Sectors were often too large, with one consultant perpetually overstretched, and there was limited opportunity for choice when the relationship between doctor and patient broke down, or a sector consultant had particularly strong views about certain diagnoses, or treatments. When I arrived to take up my first consultant post in general adult psychiatry, I found to my horror a ‘blacklist’ of patients my predecessor had refused to see or admit to his unit- most of whom I eventually managed to engage and help. I saw many for second opinions from within and even outside our organisation. The NHS was more flexible then and extensive paperwork was not required. Later, working side by side with a colleague across one sector, we were able to provide our population with more choice, and between us a range of different expertise and interests.

Now service users and patients are shuttled from one functional team to another – from community to crisis team, to in-patients, to recovery, back to their GP and then back again around the circle- each with a different consultant. Add to that the problems with staff retention in both mental health and primary care and the savage cuts to services and I fear we may have a generation of doctors who no longer know both the pleasure, and responsibility, of the keeping of stories. Instead they have become, like those who saw me in hospital last year, the anonymous faces who struggle to piece enough information together to get through the day safely, relying even more on patients, if they are able, to fill in the necessary gaps. We seem to have forgotten that it is the power of the relationships that are forged between us – professionals and patients- that matter, not the number of ‘contacts’ we have notched up; and these sustain not only our quality of life- but life itself. For me as a doctor it was the power of those stories and my ability over time to make a difference in how they ended that fulfilled me, and sometimes prevented me from moving on even when other things in a job were getting difficult. How much is lack of continuity, and the increasing sense of anomie accompanying it, not only caused by failure to retain staff, but fuelling it?

And, most of all, we patients feel increasingly unsafe  too.

Anonymous, anxious and wary as we wonder: Who is the keeper of my story now?

Fear of flying

Last week I had one of the most frightening journeys I’ve ever experienced in my life. I flew back into Orkney in the middle of the ‘weather bomb’ that hit Northern Scotland. Despite the forecast, it was surprising calm as the Loganair flight left Aberdeen, but after we had been served the customary tea and Tunnock’s caramel wafer I always look forward to, the wind began to buffet the plane violently, not only from side to side but also up and down. As we came out of the clouds towards the islands we turned on dipped wing into a curve that I soon recognised as the familiar holding pattern.

“Sorry about this,” came the calm voice of the female co-pilot, “there’s a snowstorm at the airport in Kirkwall so it’s going to be a little while before we can land.”

For the next fifteen minutes or so, it may have been longer I lost track of time, we jerked through troughs and peaks of stormy shades of grey, occasionally illuminated by a flash of lightning. My hands, cold and clammy by now, gripped the armrests. My stomach rose up into my throat as I shared false smiles with a woman seated across the aisle. Behind me, another passenger lost the contents of her stomach. As I caught occasional glimpses of the flinty sea just below I began to have those familiar thoughts: ‘is this where it will end, after all?’

A few days before I had been working with fear of a different kind as novice therapists I was teaching about suicide talked about the anxiety which comes with not knowing how to cope when you, as a mental health worker, are faced with someone who might want to end their life.

From my early days in psychiatry I had to try and learn how to cope with uncertainty. I often meet doctors, nurses and other health professionals who quiz me about what is the ‘right’ thing to say or do in a particular situation; as though we can always be prepared for whatever we have to face in a consultation, and handle it ‘properly’. As if, by some magic, we can always find out exactly what the chances are of a person seriously harming themselves by asking them the ‘right’ questions, and manage any situation by being ‘ready’ with the ‘correct’ words and interventions. So that they will be safe…and we will of course not be criticised.

The problem is that it simply isn’t possible for any of us, therapists, doctors, patients or service users, to be sufficiently primed to deal with everything in work (or life) beforehand. There are too many different permutations possible. You have to learn how to use the knowledge, skills and particular talents you have and the information you can glean at that particular moment, to do the best you can to help someone in the time available. In talking to a patient, a mental health worker has to work hard to gain a person’s trust so that the answers to his or her questions will be at the very least some reliable refection of how they are feeling. In order to achieve this the worker has to be able to contain their own anxieties; about their own performance, the safety of the patient, what might or might not happen, in order to help the patient contain theirs. If the worker is struggling to deal with their own fears, such as being simply overwhelmed by the enormity of the person’s problems, the person seeking help will not feel safe enough at that moment to share how they feel- and the worker probably will not obtain an emotionally accurate sense of what is happening for them.

Its not only novice mental health workers who find it hard to manage uncertainty. I meet some quite experienced professionals who are still very obviously struggling to cope with their own fears. For me, it indicates they need a time and place to share their worries about the job. Supervision is still sorely lacking for many workers. As a consultant psychiatrist I regularly shared my concerns with my closest colleagues but I had no formal arrangement for support and supervision. But I have seen how, if we don’t learn to cope successfully with the uncertainty and fear we face in our work, we manage it in other ways. By detaching ourselves from the pain and becoming less empathic; by trying to dissolve it in alcohol and other substances; or just trying to exert an even greater control over the world, searching for answers to those unanswerable questions I get asked at the end of lectures which always raise an uncomfortable laugh from the audience. Our fear is palpable to our colleagues as well as patients.

If we can acknowledge the limits of certainty we have a least a good chance of reaching out and helping a person to tolerate the fear they are experiencing when they begin to tell us about something awful- like their thoughts about dying or the abuse they faced in childhood. Then we can begin to give them some hope. The first step in this must be staying calm, and showing we can take it.

I used to be very afraid of flying. I suppose I’ve undergone a prolonged course of desensitization over the years, but my palms still sweat at every take off and landing. Last week they were wringing wet.

After one run at the airfield which was aborted because of a ‘build up of traffic waiting to get in’ we eventually landed at Kirkwall. I was emotionally drained and almost tearful. But I know that what helped me to contain my fear of dying in the storm was the reassuring commentary of the co-pilot. Her calm professionalism helped. There could have been panic in the cockpit. But it didn’t show.

“Ladies and gentlemen, I know it’s been a difficult flight but you’ll be pleased to know they have just checked the runway; it’s safe and we’ll have you on the ground in a few minutes now.”

I wanted to thank and hug her, but I didn’t…being British of course. So I just said ‘goodbye’ with a teary smile, and stepped onwards into the rain. Happy to still be alive.

Reassessing ‘assessment’

One of the side effects of having more time than I used to is that I begin to brood over the meaning of the words I once used without a second thought. It particularly happens on long walks without the running commentary of the radio. In a recent bIog I talked about ‘recovery’. Now I’ve started to think about a word I would never have given much more than a second thought too as a working psychiatrist- ‘assessment’.

The problem with many words in mental health is that they can begin to assume alternate meanings. Use of the ‘active’ and ‘passive’ tense can be important too in conveying a sense of who has the power. There is something very passive about being ‘counseled’ and the act of counseling has itself taken on various meanings from receiving counseling as ‘therapy’, wise counsel as ‘advice’ and being ‘counseled’ as a form of disciplinary act.

I don’t remember as a psychiatric trainee being specifically trained to carry out a ‘psychiatric assessment’. I was taught how to master a psychiatric interview, which considered of ‘taking the history’ (which can sound and feel rather like a rather one-sided action on the part of the doctor, removing something from the patient) and carrying out a mental state examination. I soon learned that for the interview to be effective I had to spend as long actively engaging the patient in thinking I was a person with whom they would be willing to share their experiences, as asking all the questions that psychiatrists are (in)famous for. Later on, I began to research how both GPs and psychiatrists approach the ‘consultation’ as the meeting between professional and patient is commonly known in primary care. Indeed actively ‘consulting’ the doctor conveys more power to the patient than being interviewed or assessed by them. I spent hours, days and weeks observing interactions for my research. I remember the patient who, when asked by the psychiatrist whether he knew if he had had a traumatic birth quite reasonably replied ‘well the Battle of Britain was on at the time doctor’.

Somewhere along the line, the psychiatric interview or consultation became the ‘assessment’ with a list of questions to ask the patient. Changes in the examination system of doctors reinforced this, with the shorter structured OSCEs (Observed Structured Clinical Examinations) with role-played patients, that are probably fairer to the candidates, but reward marks for asking the ‘right questions’ when ‘assessing depression’, ‘suicide risk’ or ‘hallucinations’. I’m as guilty of this as anyone. I teach suicide risk assessment skills. The blurb for my latest book on depression mentions assessment too.

So what’s the problem I have with assessment? Well, when a person assesses another they are implicitly making a judgment about their suitability for something or their ability to achieve particular goals. As a patient I have been assessed for therapy. That’s fair enough perhaps when there are indications as to whether or not a person might benefit rom that intervention. Psychologists regularly carry out assessments perfectly reasonably as not everyone will benefit from their specialist expertise. But how often is this mutual assessment? Are you a person I could talk to?

And so often now I see mental health assessment as a tool to exclude rather than seek to help a person find the help they might benefit from. Its more ‘this person isn’t psychotic or actively suicidal so there is nothing we can offer them’ rather than, ‘this person is consulting me. They are extremely distressed. They don’t understand what is happening to them. How can I help them?’ In our increasingly fragmented health care system everyone is carrying out assessment according to their particular ‘criteria’ while the service user understandably feels they have been ‘assessed to death- when is someone going to help me?

Can we move away, in mental health care, from this culture of assessment back to one of a consultation, which David Tuckett and his colleagues first described many years ago as the ‘Meeting Between Experts’?

I am the expert in what I am experiencing. You are the expert in what might be effective. In consulting you and providing you with all this very sensitive information about my inner life, I’m an trusting that you as a professional will be able not only to say if you will be able to help me personally, but also that you will do your best to help me access what I need.

I really need your assistance now to navigate this increasingly hostile system of care. I am asking for your help.

Solitude

Winter sunshine, Orkney

I’m back in Orkney after six weeks away. I’ve been busy, teaching and working, as far afield as Bangladesh. I’ve also found it impossible to sit down and write even when I’ve not been occupied.

One of the things I’ve had to learn as an adult is how ‘be’ with myself. When I was a child, I was often very solitary. I enjoyed reading and spending time alone. I’m one of those introverted people who needs to recover from a stressful day, with people who never seem to stop talking, by being on my own; rather than, as some people relax, by heading out to a noisy party. Extended time interacting with others without a break is for me a peculiar form of torture, although I strangely never experienced this much in the company of my patients and closest colleagues.

Unfortunately the world is full of extroverts who cannot understand the needs of someone like me. As Anneli Rufus commented in her book Party of One: The Loner’s Manifesto, its not easy to be a loner in a world obsessed with ‘team-building’; in a society where the very word ‘loner’ has connotations of being odd, crazy, secretive and strange.
However, being alone brings it’s own challenges. Living inside your own head is all very well if it’s fairly pleasant in there. But if it’s rather a mess and full of the rubbish left over from past relationships and conflicts, it’s not a peaceful place to be. Its tempting to spend more time in the company of others, not necessarily because you want to be with them, but in order to drown out your troublesome inner dialogue.

It is true that spending time on your own can be a way of escaping from dealing with things you have to tackle in the ‘real world’, but its really important not to assume that is always the case. I’ve seen too many people forced out of their protective shell by extroverts who think they should ‘socialise’ more. It happens in mental health because of the belief that those who are on their own mustn’t feel lonely. Some people need time alone to feel safe.

Looking back over my adult life, I’ve spent hours, days and weeks in the company of others trying to avoid feelings of loneliness and unworthiness, while at the same time resenting the time I’ve wasted not doing all the things I wanted to be able to spend time on. Something changed for me in adolescence. I started to hear the self-critical voices in my head (and my mother too- a born extrovert) telling me to ‘get out and mix more’. Its also hard to meet a partner too if you never leave the house, though social media is changing the way we view dating and our other interactions with the world to a degree that mental health workers haven’t quite caught up with yet. The on-line world can seem more real to you than the jungle out there…and can be just as threatening.

I find it difficult to be creative in the company of others, or when there is too much ‘going on’ in my life. Virginia Wolff was so right about needing a Room of Your Own. I’m on an island. As Anthony Storr wrote in his now classic text Solitude we need time and space to discover what we are capable of achieving. Being alone is a necessary step to learning about your self. The difficulty of course is that you may not like what you find. There may be a great deal of ‘stuff’ reverberating around your head. Being alone forces you to begin to sort out the packed store cupboards of your mind and throw out the junk. When I am on my own with my thoughts I have to find ways of dealing with them, e.g.by going out for a walk or having a sleep. Not by seeking out others who will then make more demands on ‘me’. It sounds a little selfish as I write about it. But its self-care.

An increasing number of people live alone, including many who are depressed. Loneliness is viewed as a growing problem in our society, yet there remains a real stigma to being on your own, which I suspect prevents some people from embracing their solitude and learning to live with it as they fear becoming even more lonely. I can see now that I felt lonelier in a failing marriage, making meaningless conversation at corporate parties, than I did when I really began to come to terms with being on my own on a prolonged stay in a remote Scottish cottage.

I am not completely alone now. I have a husband to whom I speak to every day, but from whom I spend quite long periods away. He is a person who needs his own space too. Each of us needs to find, what is for us, the right balance of intimacy of aloneness to be able to function.

There now….I’ve started writing this blog again.

Making a connection

The young woman, we can call her Mary (let me say now she is not a real person), is sitting in the chair opposite me.
‘What is it like, at home?’ I ask.
‘Difficult, no forget I said that.’
I wait a moment, then take a risk and ask, ‘What’s hard about it?’
Mary picks silently at a scab on her left arm. I can see blood beginning to ooze from beneath the hard carapace as she worries away at it with what remains of her fingernails. On both of her forearms are marks where she has scratched herself repeatedly with a razor blade. The newer injuries are still an angry shade of red. The older ones look like the silvery trails a snail leaves on paving stones. She has told me already how she feels a strange sense of relief when she cuts. She doesn’t want to kill herself, but there are times when she needs to have some relief from her inner pain, and this is something which seems to help, albeit for a short while.
‘Can you tell me a little bit about home…?’ I try again.
‘I can’t say I hate it can I? I mean they care about me, I suppose. But I can’t be what they want me to be.’ She sobs and her tears drip onto the arm of the chair.
I push the box of tissues towards her. ‘Do you have to be what they want?’
‘I don’t want to be…different.’
‘So tell me about being different…what does that mean?
Silence.
‘Maybe…I don’t know… you feel different?’
Silence. No- a shrug. A response.
‘Maybe that’s okay,’ I try again, ‘… to be different. Or maybe it’s not…it can be hard.’
‘Why? Why should it be okay? Not fitting in!’ She sounds angry now.
I find myself backing off a little, ‘I don’t know. Sometimes people just feel different.’
She nods but still looks at her lap.
Encouraged I continue. ‘Sometimes they are, different I mean. That’s OK with me, but how about you?’
Mary looks up. I detect an uncertain, conspiratorial glance and the first flicker of a smile. I sense we have started to make a connection.

Psychological therapy is a topic about which there is a great deal of mystique wrapped up in layers of ever more complex jargon. Each approach comes with its own vocabulary, set of abbreviations and training course. I had some training in my youth in psychodynamic psychotherapy; I’ve been on the receiving end of quite a lot of therapy too. I’ve also spent much of my life trying to help health professionals communicate more effectively with people who are distressed.

From all of this I’ve learned a few lessons:

Asking endless questions about symptoms is not the way to connect with someone.

Being a good listener is essential but not sufficient. You have to show that you are listening, and this means saying or doing things helpful things during the conversation. Not too much, and not too little. You have to be able to pick up on important cues, which may be verbal or visual, and comment on them. These important cues are the ones redolent of emotion.

You cannot fake empathy. If you don’t feel it, don’t pretend.

You have to be ready to hear awful stories about the suffering that people have endured. If you are not ready to do that then you shouldn’t be in a position where a person may need to confide in you.

You need someone to talk to about what you hear. Supervision is essential and many people in the caring professions simply don’t get adequate opportunity to make sense of their experiences with patients and service users with the end result that they emotionally close down and become insensitive to the pain of others.

You don’t have to be trained in psychological therapy to be able to connect with a person, but psychological therapies are useless when no emotional connection is made. Some people who have been trained are still hopeless at connecting.

Having your own experience of emotional distress isn’t enough. It might help you to understand what it feels like, but that won’t necessarily be what this person feels like and your work is to connect with them, not make them connect with you.

Without a connection you won’t feel able to talk about how you feel, develop trust and share your worries. I know this because the professionals who helped me most wanted to find out who I was and made the effort to connect with me. I will never forget them, or those of my patients with whom I was fortunate enough to forge similar bonds.